Tag Archives: death

Health Update

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I wanted to be open and honest with all of you, as I have been.  I do not know how much longer I can keep up with this blog.  Typing has become challenging with only one hand, and now that it shakes and is weak, typing is hard for me.

My health is declining.  I am still awaiting to have another MRI to see if the whole brain radiation worked or not.  The MRI should be within the next 2-3 weeks.  Part of me knows it didn’t work.  I have bad neuropathy in my toes which is only a side effect of the brain tumors;  My right eye is closed more than my left which it never was, and it hinders my vision when I am reading; my head feels full and heavy and I get sharp pains frequently in the areas that I know tumors are. I have a lot of weakness in my legs and walking is difficult.  My balance is off and my legs are shaky. My right arm has become even more  numb with a big increase of pins and needles in my hand and fingers.

I am unable to do much anymore.  My days are spent on the couch since I can no longer drive, and walking for any distance isn’t a reality. I am not telling you this for pity.  I tell you this because part of my journey when starting this blog last year, was to be honest about my life with breast cancer, and what I would be going through.

I don’t eat much anymore because I either have no appetite, or I am nauseated too much to eat.  The nausea meds don’t work anymore.  The fatigue is debilitating.  I fall asleep constantly and  feel tired all the time.  I feel like jelly inside, and dead.

Emotionally I have good days and bad days.  I’m afraid although my faith is keeping me strong.  My worries are for my three girls and my husband. I don’t want to leave them.  My youngest who is just 14, is especially sensitive and is constantly telling me to not leave her, and how she can’t lose me.  It kills me.  What do I say?  How do you answer that? I think she’s beginning to accept that I am not going to see 80, because the other night she asked me to always be with her even after I die. I told her I’d find a way to be with her always until she was an old lady and ready to come see me in heaven. Things like this leave me empty and in tears, but then I pray and I am comforted and my strength is renewed.

OK so there will be some changes on the blog I want to make everyone aware of.  I am no longer going to do book reviews other than possibly a book I read.  I may not post as much as it depends on the shaking in my hand. I will let you know as long as I can.

If the tumors have not responded to the radiation, there is nothing left to do.  I don’t know what the effects or what the progression will be. I have been told I could have seizures, strokes, confusion, loss of hearing, and loss of speach.  If I reach the point that I can no longer type or communicate,  My oldest daughter will keep you update on what is happening and will let you know when I pass.

I ask for your prayers.  I remain hopeful there will be a iracle and I go into remission for a long time. Thank you for your support and kind words. xo

Sunday Morning, 3:15 am

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Can’t sleep.  Yesterday was a really tough pain day from the tumor in my collarbone and neck.  The pain pills refused to provide any relief, until near bed time.  Then I don’t sleep soundly because each time I move I’m waiting for the surge of pain but then relish that it isn’t there!

My cousins’my aunt, and two of their kids came out to visit for a couple hours yesterday afternoon.  It is always great to spend time with family you have a history with.  They are twins, 2 years older, and have been the biggest influence in my life.  Every funny, happy memory I have growing up, revolves around that family.  Cancer has not escaped them either.  Their dad, my uncle, and my mom’s older brother, died from melanoma and prostate cancer in 2006.  He fought 9 hard years and if he had just went to a dr earlier for both, he would still be alive today, especially with all the new advances.  He was only 63.  Six weeks after I was diagnosed, in 2010, My cousin Meg was also diagnosed with stage 1-2 invasive ductal carcinoma.  She went to Sloan Kettering, and only had to have a lumpectomy with a sentinal node removed.  There was no lymph node involvement, and she has been cancer free since 2011, after going through chemo and radiation, as precautions.

It isn’t easy hearing of family and friends who get this disease.  My heart breaks for them knowing what they will go through.  It is also hard for me when their cancer is no where serious as mine, or seeing the treatments that I have tried work brilliantly for them, but do nothing for me.  I am only human I guess, and though I really try not to ask why?, I admit that lately it has gotten harder to not ask that.

This week we lost a country music singer named Joey Feek to ovarian cancer.  Joey would be best known from her and her husbands Overstock commercials.  He always had on overalls and was playing the guitar, singing to her.  She was beautiful. with long brown hair, and a voice that blended with her love’s seemlessly.  Joey was diagnosed 2 years ago, shortly after the birth of her youngest girl, who was born with Down’s Syndrome.  She made it her goal to fight her stage 4 cancer so she could see her youngest turn 2.  She reached that goal recently, and made the brave choice to end treatment and go in peace.  She passed away 3 nights ago with her husband Rory by her side.

I was shocked to even hear she was sick on Monday.  I had not seen or heard of it on the news or social media, until the end.  I had just been seeing their commercials again on TV which brought her name to mind when I saw a clip on Yahoo!  She was only 40, and I believe she has 4 young children.  It upset me a lot because of what I am going through, and because I looked at this another wasted death from a cancer we should know more about.  Ovarian cancer is one of the least known about cancers in women’s health.  There are no symptoms for early detection.  The best you can hope for is to have a family history which would allow you to be screened, have breast or colon cancer and get screened for the braca 1&2 gene, or pay for a private screening on your own.  By the time the disease is detected, it is in the advance stages, and rarely able to go into remission.  Available therapies are not effective and while they may provide some time, the quality of life is not there.  There is so much wasted beauracracy and money in big pharma and this government.  Possible treatments, and even cures wait years to get to a dying public, and sometimes I think they deliberately are withholding the cures so they can make more money on the treatments.  Let’s face it, in this country, the unhealthy make them billions, and if that were to end, where would the big cushy salaries come from?

Don’t mind me, I’m just a terminally ill cancer patient, who has more onmy mind than sleep and I’m a bit cranky waiting for the next dose of pain killers to kick in.

Thanks for following, for your constant support, and if you have any questions, or comments, please share them with me.  XO

Guarded Thoughts

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When I started this blog I wanted two things from it.  I wanted it to be a place where others fighting cancer, or those caring for a loved one with cancer could come to learn, share, and find a common voice in this scary, crazy world that is cancer.  I also needed it to be a place where I could express myself.  A journal, where I could let go and write about my fears, worries, feelings, and experiences.  To somehow make sense on what has been thrown at me and my family for the past 5 years.

I think I am doing ok with the first part, but I find myself being very guarded with the second.  I have had a lot of shit happen to me the past 5 years.  More than most experience in their lifetime.  There is so much that I have not mentioned yet, and thoughts I have not shared or confronted even.  I think I didn’t want to bother people with my depressing mindset at times.  I worried that if I truly wrote what I was going through that day, or what thoughts kept me up the night before, it would make me seem as if I was looking for sympathy and that is the last thing I want.

I just need to get these thoughts that have plagued me for so long out.  Writing is cathartic for me.  It has always been my safety net.  As a teen, I would write about the struggles I was having with my mother, or about the boy I had a crush on. Mentally it calmed me down, and helped me make sense at what was scaring me or upsetting me at the time. My journal was the best listener, and growing up I felt like I wasn’t listened to much. Even now I feel as if no one really listens to me.  I try to share my fears of dying, or what will happen if my cancer progresses again, and all I get is the positive pep talk of how strong I am and how I could live another 20 years.  That’s all well and good, but sometimes I just want my fears to be heard you know?

This is what I haven’t been accomplishing with my blog.  I think I became so concerned about writing for readers rather than writing for myself.  And maybe that is what you are supposed to do with a blog; write for your readers.  Maybe this is how you get followers and become popular.  The problem is, I was never in the popular crowd, and I want to write for me.  I’m the only one who matters.  I don’t need approval or praise for what I write. I write because it lets me release the voices that are screaming in my head. I write because if I don’t I will explode, or suffocate, depending on the day.

I’m angry a lot lately.  I’m angry that I have to go through this, and feel like this everyday.  I’m angry that my brother-in-law woke up one morning and decided to strangle and beat the life out of my sister.  I’m angry that because of what he did, my family is now fucked up.  Two of my three girls suffer from anxiety, one so badly it becomes debilitating.  The stress of Kim’s murder, having my two nephews live with us, my younger nephew having to move to another relative because he is mentally ill and threatened to kill my youngest, and my marriage almost ending because of him, have all caused recurrences of my cancer.  I can pin point each recurrence to an event. I think as time goes by and the effects of what he did continue to poison our lives, the angrier I get.

This is just the tip of the ice burg when it comes to what I deal with everyday.  I long for a normal, boring, happy life.  Does that even exist?  I know we all have problems, and I know there are people with bigger problems than mine, but is it too much to ask to just get a break?  Can we just have a few years where something bad doesn’t happen? I hate when people tell me “It could get worse”.  I run from that phrase because every time I or someone else says it, I swear something worse happens.  No joke.

I’m tired.  Tired of being sick, tired of worrying if my girls will be alright, tired of being in pain every day, tired of being tired. If reincarnation exists, I must have been a douche bag in my previous life.  I hope somehow, I can have some memory of this life when I move on to the next, because it has to be so much better than this. I know I am blessed on many levels, and I don’t take those blessings for granted at all.  It would just be lovely to have smaller problems, like needing a route canal instead of what I have on my plate.  Whatever it is that lies in my future, I will continue to hope and pray that it will be better than what has been in the past.

Barb

 

Remember to Breathe

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“Whenever I feel a little blue, I remind myself to breathe.  It makes a big difference!”      – Author Unknown

I apologize for the infrequency of my posting.  I have been dealing with a staph infection where my ruptured implant was.  I have been in the hospital since 2:30 am Thursday.  IV antibiotics, Infectious Disease doctors and painful, gross things I don’t want to leave you with mental pictures of. (You really should thank me!).  So here I shall be for the next few days, at least until I heal enough to be able to switch to an oral antibiotic.

There are going to be times in everyone’s life when you will be facing something such as a physical illness, emotional or physical pain, a death in your family; sometimes in a violent way.  Whatever it is, there will be a few seconds of time that will feel like a fishbowl was placed over your head, and a vacuum is sucking all the air out of your lungs.  Your hearing becomes muffled and you are aware of a slowing down of time. Remember to do one simple thing. Breathe.  Take a nice slow, gentle inhale and let the air fill your lungs.  Hold it for a second, then exhale slowly and controlled.

Immediately you realize you can hear everything going on around you, your vision is crisp and clear.  Take another breath. Find a pace that feels comfortable, and be aware of the air traveling in and out of your lungs.  It didn’t kill you.  That thing that just happened that has been on your list of things you would never survive?  Guess what?  You just did.

Barb

 

 

 

Whispers to God at Night

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Hi God it’s me again.  I know you must be busy.  You must get tired of billions of people just asking for things every second of everyday.  Do you ever just want to yell at them to shut up? Or ask them why, for maybe one day they couldn’t just be thankful?  We are all needy toddlers screaming “up up up” constantly aren’t we?

I am thankful for each day you have given me.  I’m thankful for my beautiful daughters, my husband, and my 2 cats.  I’m thankful for being able to spend 44 years with my sister until her husband took her from us. I am thankful I have been blessed with some really great friends throughout my life.  For always having a home to keep me sheltered and safe.  For never going to bed hungry, unless it was Spanish rice night and then I’m happy I did go hungry. I thank you for my education, for all the different jobs I have had.  Thanks especially for giving me the chance to be a Doula and witness several babies be born.  Also for gifting me with an exceptional talent for sewing and being able to make some awesome clothes and handbags that made many people happy. Thank you for the ability to read, for books, for computers to use to write my thoughts, for smiles from strangers that brighten my day, or great haircuts that made me feel beautiful. Thank you for trees that graced the sky like poetry on paper. There are endless things I could list that I have been truly thankful for, but I wanted you to know some of the biggies.

I know millions want to be healed from cancer.  I know I have fervently prayed to you.  I had such faith that you could make me healthy again.  It’s ok that you couldn’t.  I know you are busy and I am sure that when I die, you will be able to tell me why you had to take Kim when I was already sick and going to go soon anyway. However, there are a few things I need you to promise me.  And if you don’t come through, lets just say I will not be voting for you in the next supreme being election.

  1.  You better exist.  Because if all this time I’ve been talking to myself, I’m going to be really pissed.
  2.  There better be a heaven, and it better be the greatest thing ever.  I want Kim and my pets waiting there for me and I want to look the way I did when I was 25.
  3.  You need to swear to me that my girls, and Kim’s son Matt will live long, happy, healthy lives.  No divorce, no death, no cancer, no homelessness, no more trauma.  That is the least you can do for 4 kids who didn’t ask to come into this world, and have seen more horrors than most adults ever see.  You owe me this.

That’s it.  There were only three so that should not be too difficult.  I also would like a sign that you agree to my terms.  If at all possible, could you allow me not to suffer very long.  I am afraid of the pain and the girls will be scared and feel helpless to see me that way.  This actually would go with number 3 of my aforementioned requests.

Thanks for listening.  Please don’t leave me.  I can’t handle this on my own.

Amen

 

 

 

Facing The End

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Last February when it was discovered I had a tumor on the base of my brain, and then 2 months later another one on my frontal lobe, I was forced to face the inevitable that I was going to die from cancer.  I always knew I would, but when it was only in the lymph nodes I could fool myself that it would just stay there and I could live another 2 years.  All that changed when it spread to my brain.  Meeting with my oncologist cemented the fact that there was not much she could do.  Because my cancer was HER2+, it was very aggressive and spread easily.  There are only a handful of targeted therapies made to suppress the HER2 receptor and I had been on all of them.  My only option was to try yet another chemotherapy but they were harsh and none of them would cross the blood brain barrier.  After 5 years of being on some type of chemo or targeted therapy, of losing my hair twice, living with constant bone pain, fatigue, and nausea I had had my fill of drugs.  My body was breaking down from all of the poisons.  That’s really what they are you know, poisons that kill the cancer but everything healthy too.  My other option was palliative care which means they keep you comfortable and deal with your symptoms as they come up.  This was the way I chose to go.

I haven’t been on chemo since 12/14 and they removed the second brain tumor in May.  I haven’t seen a doctor since then.  I wanted and needed a break.  I wanted to feel like myself again and give my body time to purge the drugs and heal itself.  2 months ago, I began to have serious pain in my breast with the implant and my shoulder blade.  After some trips to the ER, it was discovered my implant had ruptured and that there was another tumor in my clavicle. I decided to switch my care from Philly to a group closer to home.  I have surgery on Monday to remove the implant and I see the new oncologist on 1/6.

I don’t feel good anymore.  I am exhausted all the time.  Walking up the stairs or even to the bathroom, leaves me short of breath.  The pain in my back and shoulder never ceases.  The pain killers aren’t helping much and I can’t eat or sleep.  I find myself staring at my three girls.  I’m trying to memorize every line on their face so I can take it with me.  I’ve left letters for them, filled with just a fraction of the things I need to tell them.  How do you say goodbye to the best gifts you ever received.  My 21 yr old Kait and my 18 ye old Erin are moving on with their lives and I know they will be ok.  It’s my 14 year old Emma that I worry about.  She is such a sweet, loving young woman and we have an incredibly strong bond.  She is the one who tells me I’m the most beautiful woman in the world.  She often says she ” doesn’t know why she loves me so much, she just does’.  I feel like its unfair that I had the least time with her.

I don’t want to have cancer anymore. I want to wake up and have my life back again. I want my dreams to be realities.  I want to finish my book and I want to go to Europe.  There are too many things I have left to do.  I want to look in the mirror and see two healthy breasts, not a deformed, hard form with scars everywhere.  I want my husband to look at me like he used to.  I don’t want to hear Emma cry “I can’t lose you mom”.  I have begged God to heal me. I guess he’s busy this time of year.

My family has lost so much in the past 5 years. My only sister was murdered by her husband on the 1 year anniversary of my mastectomy.  In that moment my life was changed.  I had to tell my parents, and my two nephews who were now orphans.  They went to school that morning and never returned to their home or school again.  We took them in.  Their father’s mother stole everything from them to pay for her son’s defense.  We had to wait 3 years for the trial, and in February of 2014 he was finally sentenced to 30 years with no parole.  During this time my youngest nephew became seriously mentally ill.  He had always had some minor problems, but they became dangerous once he lived with us.  After months of searching for answers and looking for help, he finally  had a breakdown and was committed for observation for a week at a clinic.  We were told he could no longer live with young girls around and he needed to be the only child in a house.  After two years of living everyday in fear and anxiety, my nephew went to live with his father’s uncle in Virginia.  Things returned to normal.  My older nephew, Matt stayed with us and is now away at college and happy.  My cancer returned three times from when Kim died, until her youngest son moved away. Stress caused it to come back, but I still had faith I would win this battle.

So now I am facing the end of my life.  It will be sometime in the next 6-9 months most likely.  This will be my last Christmas with my family.  There will be a lot of lasts I will have to deal with.  There will also still be firsts.  My daughter Erin’s first prom, and God willing her high school graduation.  I know I have been blessed, and I truly am thankful for each day I have been gifted to live in this world.  I just wish I didn’t have to make arrangements for the end.